Medics, nurses and care assistants only spend an hour or so (sometimes just a MINUTE or so) with dementia sufferers. They seem to have little or no insight of the effect dementia has upon the whole family & home situation, however 'good' they are (until WE present ourselves at the surgery, suffering from stress & depression etc.)
Talking point contributors often spend the 'early stages' running themselves ragged trying to understand what dementia is all about and meet the needs of their own family (spouse + children) AND the needs of the person suffering with dementia. If we're 'lucky' (?) we live quite near Mum (*or whoever) and if not we're consumed by guilt because we're "not doing enough", or in some cases because the AD sufferer resents attempts to help, is in denial of their problem etc. We may have other family members to share caring duties with, or we may be sole carers. Or, we may have other family members who are singularly UNhelpful and do more harm than good, by being obstructive, in denial or just plain argumentative at a time when we need it least. If the GP is involved yet (& they frequently aren't) they may, or may NOT (thankyou, N.I.C.E.) be able to prescribe meds. to slow down the memory loss & relieve anxiety.
Once sufferers are past the early stages, and actually need help with day to day tasks, living arrangements are frequently altered so that Mum (*) comes to live with one of her grown up children & their family. This is a HUGE adjustment for everyone to make - in physical, mental & emotional terms - and often the AD sufferer appears to go downhill fast because they are trying (& failing) to learn to cope with their new situation. (In my case circumstances permitted me to go to live with her, but this still caused her difficulties, even though she is still in her own house) Again, the carer is often consumed by guilt because 'the plan' didn't work, but seemed to be the only viable option and now it has turned out not to be an improvement. Worse, now everyone is suffering to some extent. The carer may have given up (or lost) their job for this, to take up part-time work to enable them to devote more time to 'caring'. Ergo, reduced income which £40 per week (if they claim it) does NOT cover. Family relationships can become strained to breaking point. More guilt.
I can't comment from personal experience past this stage, but you have only to read some of the despairing threads on Talking Point to start forming a picture of why we need each other here, and I suggest you do so if you are serious about your research.
There is nowhere else which allows one to question "Why this", "How do I ... (deal with that)", "What the Hell can I do about ..." speak freely, vent some of the stress and pain and anger, and get straight, honest, understanding answers from other people who know what REALLY goes on, and who care enough to share their acquired wisdom & experience in dealing with this awful disease and the way it tortures & crucifies us. And I don't just mean "There there dear, you have a good cry" We can and do tell each other if we think someone's got it wrong, and try to put different ways of looking at (& dealing with) situations. We exchange views & opinions, discuss differences, and (perhaps most important of all) know that here we can say unthinkable and unsayable things which we dare not express anywhere else, because of the constraints of convention. This is an unspeakably hellish disease for all involved, & unspeakable, bitter thoughts need to escape somewhere, or we shall be consumed by them.
